State health officials announced March 27 the first death of a West Virginian from complications of COVID-19. It was a mistake.
A correction issued later said Sundale Nursing Home in Morgantown passed on inaccurate information about a resident diagnosed with the virus. The resident was still alive.
This was an early indicator of the struggles that persist today in tracking the pandemic’s impact. Officials grasping for insights into an illness like nothing they’d seen, stumbles in response and communications breakdowns have exacted a toll on the public’s understanding of the virus and in the lives of those directly touched by the deadly effects of COVID-19.
Two days after the state retracted its pronouncement of West Virginia’s first death, the virus claimed Viola York Horton, 88, of Marion County. As she died at Ruby Memorial Hospital, her daughter watched on a nurse’s cellphone.
Horton collapsed in a hallway at her home March 23. A few hours later, a doctor at Ruby Memorial diagnosed her with COVID-19. As Horton lay in a hospital bed, Brenda Kent of Marion County worried outside her mother’s room. Hospital restrictions prevented Kent from visiting her mother. Kent said goodbye over FaceTime.
Similar stories became more commonplace over the next seven months. West Virginians became accustomed to Gov. Jim Justice revealing during daily briefings the age, gender and location of others killed by COVID-19. It took 110 days for the death toll to reach 100. Today, the number is more than 350 and counting.
Following early closures, West Virginia has reopened again with state officials battling to combat the pandemic’s economic devastation, but infection and death rates have soared.
Watching the state move to what some call “the new normal” has been difficult for people such as Addie Cole, who watched her sister, Debbie Taylor, die after both of them and other family members were diagnosed in June.
Cole worries about friends she’s seen barhopping or frequenting other high-risk places. Seeing people shopping without masks or abiding social distancing guidelines frustrates her.
“I want to say I want people to get [COVID-19] to know it’s there, but I really don’t, because I don’t want this to happen to anybody else,” Cole said. “This is such a terrible experience. I wouldn’t wish it on anybody.”
For those unaffected by the virus, its reality can be difficult to comprehend.
Physicians usually are responsible for determining whether a death is related to COVID-19, said Dr. Cathy Slemp, who until June, served as the state’s health officer and helped implement the state’s initial response.
The final decision, Slemp said, tends to come down to one question: Would the individual have lived longer if COVID-19 was not a factor?
“You use the physician’s best judgment, and that’s the standard throughout the country,” Slemp said. “These cases are not always black and white. Some are very clear, others more complicated. That’s where you have to rely on the judgment of the health care provider who knows the patient. Who treated them. Who best understands what happened to them.”
West Virginia’s Department of Health and Human Resources maintains a live database of all confirmed cases of COVID-19 and other infectious diseases. Most county health departments can access the database, Slemp said. Physicians or others treating patients whose deaths are linked to COVID-19 are responsible for notifying county health departments.
County health officials use the state surveillance system to cross-check to ensure the patient had previously tested positive for the virus. If not, the county health department must request a test, according to state health department protocols. The virus can be verified after death in some cases, based on access to the body and reason to believe the person had been infected, Slemp said.
“There are instances where we’ve done that. If there’s, say, a clinical picture that was consistent with COVID-19 and never actually diagnosed, or if the exposure became clear right after a person died,” Slemp said. “If that happens and you still have access to the body — it’s at the funeral home, let’s say — so in that case, the funeral home or others can still do a test to prove if it’s COVID-19 [related] or not.”
If officials can’t test, the case might be cited as a probable COVID-19 related death, Slemp said.
Health officials also must complete COVID-19 death reports that include such information as patients’ comorbidities, listings of COVID-19 symptoms, explanations of how they were exposed to the virus, whether they were hospitalized for treatment and when they tested positive.
State officials denied the Gazette-Mail’s request for copies of these records with patients’ names and identifying information redacted. Information from those documents could be used to determine the rates of comorbidities and other underlying factors, identify trends in exposure and gain a wide range of other insights into the virus and its effect on West Virginia.
After verifying information through the state system, county health officials fax death reports and call in to an on-call state epidemiologist. State officials vet the information again and then send it to the federal Centers for Disease Control and Prevention, the agency in charge of final classification for any COVID-19 death.
It’s possible the process has changed since Slemp’s June 24 ouster as state health officer. There are other caveats, she said.
Not all doctors are well-versed in completing death certificates. If COVID-19 is a contributing factor to a death, it could be listed in different places on a certificate. But some cases still might need to be verified and checked by the state medical examiner.
All of this is coupled with the demand for quick and accurate data, which is being produced daily to the extent possible but is difficult to turn around with so many steps, Slemp said.
The information posted on the state’s coronavirus dashboard, for example, is more useful from an epidemiological standpoint.
“It shows us the bigger picture and can help us make determinations on how things are faring in the population as a whole,” Slemp said, “but it’s not necessarily useful for an individual without knowing the context and process behind it.”
That information also is posted before a death certificate has been verified and issued by the state.
Data always are evolving. The checks and balances central to the process for confirming and reporting a COVID-19 death mean there are changes made throughout. Sometimes, people take changes to be errors, but that’s not the case.
Instead, Slemp said, those changes usually reflect adjustments or corrections made in light of new information.
“Clean, neat data usually takes weeks to months to put together, and we don’t have that luxury here,” Slemp said. “We’re turning information around so much quicker than we have had to in the past, and it’s information people need, but it doesn’t — you know, it’s not initially reported as perfect data. There needs to be adjustments, and the public is watching it happen in real time. They see those glitches, the data cleanup. That doesn’t often happen.”
Numbers of deaths might be inflated or undercounted based on the reporting of probable COVID-19 deaths or cases where COVID-19 is an unknown, unreported factor. Death certificates could be incorrectly completed.
Inaccuracies frequently are caught in the process and are unlikely to be statistically significant, Slemp said. The system is imperfect.
“What the end result reflects, I think, is a pretty accurate look at deaths from COVID-19,” Slemp said. “What’s wrong will be corrected, and the rest evens out, more or less.”
Wearied by trauma
As the pandemic’s spread began in April to accelerate in West Virginia, the University of Washington’s Institute for Health Metrics and Evaluation projected 500 virus deaths here. Now, the forecasted toll is more than 1,740 by Jan. 1 if restrictions and mask practices remain constant.
If restrictions ease and mask use decreases, the count could top 3,330, roughly equal to the population of Summersville.
“We have no context for a situation like this, as individuals or even as a society,” said Dr. Jen Reyes, a counselor with a focus on trauma at West Virginia University’s Health Sciences Center. “There is no ‘right’ way to respond to this trauma, and even as it’s so widespread, people’s responses will be different, I think.”
Even grieving is impacted by the virus.
Kent is an example, saying goodbye to her mother over FaceTime. Visitations at hospitals and nursing homes have been limited. Funerals pose a risk for transmission of the virus.
People such as Addie Cole, whose sister died after 11 other family members also tested positive, watched loved ones die while also sick.
“What really shocks me is I did nothing wrong, but I will always now feel like I did,” Cole said. “You can be beside somebody that is completely healthy, and, you know, if they have it, then your chances of having it are really good.”
COVID-19 is the latest in a series of blows for West Virginia, where people have battled poverty for generations and, in recent years, a drug epidemic.
“By nature, as Appalachians, we’re strong, resilient and hardy people who tend to rely on our inner strengths to get us through. At a certain point, though, there has to be some give,” Reyes said.
Fatigue is setting in.
“As an Appalachian populace, we’re worn out,” Reyes said. “It was almost like a perfect cocktail for a storm has come together in this pandemic, politically and culturally that we’re seeing. It’s really easy to conflate all these, quote unquote, bad things.”
Other traumatic events have beginnings, middles and ends. This one offers no narrative that makes it easier to understand or digest. Reyes compares it to the Sago Mine disaster of 2006 that trapped 13 miners underground for two days and killed all but one.
“A narrative is incredible in adding context to tragedy. The beginning, usually, is a normal day. Then I turn on the TV to see something really bad happening in Sago. I continue seeing what’s happening, then it ends. The end was terrible, really tragic, but we lived, there was no immediate risk of more tragedy in that situation,” Reyes said. “That’s the differentiation.”
The trauma shows no signs of easing.
While the first 100 deaths from COVID-19 occurred over the course of 110 days, the next 100 died over a span of 43 days. The third 100 died in 22 days. Outbreaks are still rippling throughout the state.
“It’s certainly not over here, or anywhere for that matter,” Reyes said. “We need to figure out, together, how to get through this as whole as we possibly can.”